Monday, 5 April 2021

Getting the Covid-19 Vaccine - My experience as a Disabled and Chronically Ill Person

I’ve debated writing this post for a few weeks now, as I know there are so many different thoughts and feelings around the vaccination process. But I thought it might be helpful to share my personal experiences of getting the Covid-19 vaccine. I know before I received mine, I was searching online for posts by others in the Disability/Chronic Illness community, but I struggled to find much. So hopefully if someone else is looking for what I was looking for, they might find something helpful in this post. 


I want to start by acknowledging a couple of things. Firstly, I know people have different thoughts and feelings about getting this vaccine, particularly in the chronic illness and Disability community. I think it’s completely justified to have concerns about side effects, especially when you already live with medical issues, and so I totally understand that not everyone will feel getting the vaccine is the right thing for them at the moment. This post isn’t here to tell anyone that they should or shouldn’t get the vaccine. Only to share my experiences of the process. It’s not an easy choice to make, so you need to do what’s right for you and your medical condition(s). 


The second thing I want to recognise is how difficult it may be to read this post if you are still fighting to be prioritised for a vaccine. So many chronically ill and Disabled people have been left off the list, and it makes me so sad and angry that this is happening. Throughout this pandemic, Disabled people have been treated appallingly – it’s been exhausting and demoralising. And the last thing people need, after being told we are ‘vulnerable', is to have to fight to be protected. It’s something I will continue to campaign for because no-one should be fighting this alone.


A bit about my health

If you’re a new reader of my blog, you may not know much about me, so I thought I’d start with a quick rundown of my current health issues and why I should be in a vaccine priority group. I’ve had problems with my health since I was a baby, but things went downhill pretty quickly at the age of 15. I was originally diagnosed with ME/CFS, but this never seemed to really explain all of my symptoms. Ten years later, I was finally diagnosed with Hypermobile Ehlers-Danlos Syndrome (hEDS), Postural Orthostatic Tachycardia Syndrome (POTS), Gastroparesis, Intestinal Dysmotility, Bladder Dysfunction and Mast Cell Activation Syndrome (MCAS). I also have a diagnosis of Asthma (as well as Depression, and am currently on the waiting list to be assessed for Autism). It’s difficult to know whether I do have ME/CFS alongside these things – some Doctors think I do, while other Doctors aren’t so sure. All I know is, I really struggle with chronic fatigue and various other symptoms that could be explained by an ME/CFS diagnosis, and if I catch a virus (which I do pretty often!) it can really set me back and take a long time to recover from (if I recover completely at all). 


I didn’t receive a Shielding letter when we first went into Lockdown, as my asthma isn’t severe enough and my other conditions didn’t fit the criteria. I made the choice to Shield however, as I know how much a virus or infection can set me back. But because of this, I knew I wouldn’t be in priority Group 4 for the vaccine rollout, so I really hoped I would be in Group 6. But when news started to break that most people with moderate asthma wouldn’t be given priority for a vaccine, I started to panic. None of my other conditions were mentioned in the priority documents – ME/CFS should place you in Group 6, but I had no idea whether that diagnosis was still on my medical records, and was pretty certain my other conditions wouldn’t automatically put me in a priority group. I’m on a Symbicort inhaler as a SMART regime for my asthma, as well as Montelukast – neither of which seemed to place me in Group 6 from what I was reading. 


The process of getting an appointment

At the beginning of February, I received a text message from my Doctors Surgery, telling me I was now eligible to book my Covid-19 vaccine and to follow the link in the message. I was pretty shocked at first, as I’d honestly thought I would have to fight to be put in Group 6 (like I’ve had to fight for so many other things regarding my health over the years!) But when I accessed the link, it took me to a webpage saying there were no appointments and that I should keep trying. Over the next week or so, I tried the link twice a day (morning and just after lunch, when I thought appointments were most likely to be released), but still no luck. Then the last time I tried the link, it told me that the link was no longer valid and that I would be contacted again when they could offer me an appointment. So near, yet so far!


So I waited, and waited, but I heard nothing. After the relief I felt when I received the original text, I was now getting more and more anxious that they’d sent it to me by mistake and that I wasn’t in fact in Group 6 at all. The news was breaking that people with moderate asthma were being removed from the priority groups, and Disabled and chronically ill friends all around me were struggling to get their jabs. I really felt like I was going to be left off the list and would have to wait until my age group was called, despite the fact I have complex chronic health problems.


A few people told me I should call my Doctors to ask what was happening, but my Surgery had put out posts on Facebook telling people not to contact them about the vaccine, and they had the same message on their website. They had also closed to anything but urgent problems to try and cope with the vaccination process, so I really felt like I shouldn’t be bothering them when they were obviously snowed under. So I just continued to wait. And as I waited, I started to see post after post on our local Facebook group from people who had received their vaccination and were in Group 6. After waiting a few more weeks and still not hearing anything, I finally decided to just drop my Doctors an email. I thought the worst that could happen would be that it went unanswered, and with news of Lockdown starting to lift, my anxiety was just getting worse so I needed to do something.


Within about five minutes of me pressing send, my mobile rang – it was someone from the Doctors saying they’d received my email and wanted to get me booked in as soon as possible, as I should have been able to get an appointment weeks ago. Something had obviously just gone wrong with the link I was sent, but because I thought I couldn’t contact them, we hadn’t been able to get it sorted. The lady booked me in to have my Covid-19 vaccine a couple of days later at my local Doctors Surgery. The overwhelming relief that I felt after hanging up from that phone call was immense. But along with that relief I also felt incredibly guilty. Guilty that I’d been able to get a vaccination appointment when so many Disabled and chronically ill people were still struggling to get theirs. I know I had nothing to feel guilty for, because I was eligible for Group 6 and so should have got that appointment weeks before. And I knew that me having my vaccine wasn’t stopping someone else getting theirs. But the mind is a funny thing and despite me knowing the logic of the situation, I still felt awful that I had got an appointment when so many others couldn’t. And that’s why I will continue to campaign about this, because everyone with a Disability or underlying condition should also be able to access a priority vaccine. You only have to look at the statistics to see how disproportionately Disabled and chronically ill people have been affected.


Having the vaccine

My vaccine appointment took place at my local Doctors Surgery, about five minutes from our house, which I was so grateful for. I was a bit concerned I might have to go to a larger vaccine hub further away (it wouldn’t have been the end of the world, but I wasn’t keen on being around a lot more people and having to use my energy to travel a further distance). But thankfully my Doctors were vaccinating those with underlying conditions locally.


On the afternoon of my appointment, my Dad drove me the five minutes down the road – we parked in the designated parking in the supermarket next door, got me into my wheelchair and I put my mask on. The short route to the vaccination centre was lined with friendly volunteers in high-vis jackets – there to help anyone that didn’t know the way or who just needed to see a friendly face. I think I spoke to more people on that trip than I have all year! My Dad accompanied me until I was outside the Surgery, as I was feeling a bit anxious and just wanted a bit of moral support. He then headed back to the car and I was met by another volunteer who asked me a few initial questions. I can’t remember exactly what they asked, but it was something along the lines of asking my name, checking I didn’t have Covid symptoms, taking my temperature and giving me some hand gel. 


I was then escorted through the exit (as the Disabled access was better that way) and straight into one of the consulting rooms, where I was met by a Doctor and a Nurse. They introduced themselves and explained that the Doctor would be giving me the vaccination and that the Nurse was doing the admin side of things. I was then asked several more questions, including was I feeling well in myself, did I have any allergies, had I had a positive Covid test recently and did I have any questions of my own. I explained very briefly about my medical history and said that I felt as well as I normally do! And I also let them know I have Mast Cell Activation Syndrome (MCAS), which causes me to have random allergic reactions to anything and everything! This was the thing that concerned me most, as I was worried they either wouldn’t give me the vaccination at all, or that I might have to contact other Doctors to be given to go-ahead.


I don’t think the Doctor had heard of MCAS, so I had to give a bit of an explanation about what it is and how it affects me. He then asked if I had ever needed to use an Epipen for a reaction, or if I had even needed to be resuscitated because of a reaction (which I answered no to both questions). He then reassured me that he wasn’t too concerned about which vaccine he gave me, and that I would be asked to stay for 15 minutes afterwards anyway, so if I did start to feel unwell they could deal with it then. 

Once we’d chatted through all these things, it was time for them to give me the vaccine. I was given the Pfizer vaccine, which surprised me a little bit, as the AstraZeneca is usually preferred if someone has issues with allergies. But I think because I’ve never needed an Epipen, they were a bit more relaxed with which one they chose to give me. Having the actual injection didn’t bother me particularly, as I’ve had so many injections and blood tests over the years! Some people have said they didn’t feel the injection going in, but I personally did, although it only lasted a few seconds. I was then given my card telling me which vaccination I had received, the batch number and the date, as well as some paperwork about ingredients, side effects and so on.


After having my vaccine, I was then directed to wait in the waiting room (or departure lounge as they called it!) for 15 minutes. There was a digital clock on a TV screen, and the time I could leave was written on my paperwork. The only thing I noticed as I sat and waited was that I had started to feel quite dizzy and hot, but this could be completely unrelated to the vaccine. After my 15 minutes were up, I left the Surgery, went back to meet my Dad and he drove me home.


Side Effects

By this point, I was feeling pretty tired (not vaccine related, just my ‘normal’ chronic fatigue), so when I got home I lay on the sofa and fell asleep for quite a while. When I woke up, I noticed I was still feeling quite dizzy, especially when I sat or stood up. As the evening went on, the dizziness continued and my arm started to hurt more. I also generally just started to feel a bit worse in myself than I normally do – nothing specific, just generally feeling like I was run down.


That night, I slept through the whole night without waking, which is pretty unusual for me (usually I will at least wake up once to go to the loo!) I woke up quite late and still just felt absolutely exhausted. Now, this isn’t unusual for me, as I do struggle with chronic fatigue, but this felt like more than that. The best way that I can describe how I felt is how you feel when you’re coming down with the flu. Every single joint in my body hurt – even my fingers and toes were painful to move, I had a headache, felt shivery (I didn’t have a temperature, but felt like I did), had a lot of pain in my tummy and back (it kind of felt like it does when I have a kidney infection), felt really sick and dizzy and just unbelievably tired. The arm I had the injection in was also really sore – I found it hard to lift it or do much with it because of the pain. I also seemed to develop earache, which I thought was a bit random! 

It’s always difficult to distinguish side effects of a medication/vaccine when you’re chronically ill, as a lot of these symptoms are ones I get as a result of my chronic illnesses. But as these all came on together soon after having the vaccine, it feels safe to assume that they were probably vaccine side effects. I take regular pain medications, including Paracetamol, but if I didn’t, I would have definitely taken Paracetamol to try and help with the side effects. It did seem to help the headache and muscle/joint pains a bit, although they were definitely still very much there! 


On the first day, I made the mistake of trying to do some editing at my computer. I really needed to get a video finished and thought I could just push through the symptoms like I often try to do with my chronic illness symptoms. But in retrospect, I think I would have been much better off spending the whole day taking it easy. After struggling to sit upright and concentrate (my brain felt really foggy – even more so than it normally does), I was just feeling increasingly unwell, so eventually listened to my body and fell asleep on the sofa for most of the afternoon. It was definitely what my body needed at that point. That night I didn’t sleep so well and kept waking up in pain (both from the injection site and just general joint and muscle pains).


On Day Two, I didn’t feel a whole lot better, so I decided from the outset to just rest and actually listen to my body. I continued to find the regular Paracetamol helpful and slept on and off throughout the day. Most of the symptoms were still there, although as the day went on, the joint and muscle pain did seem to lessen a little bit. Over the next few days, I found that the symptoms gradually started to reduce. It didn’t happen particularly quickly (I hadn’t expected it to) but I did seem to feel noticeably less awful with the side effects each day (although chronic illness symptoms were still making me feel rubbish!) I’d say it took a good few weeks though before I felt like I was back to my ‘normal’ level of chronic illness symptoms. The side effects that seemed to persist the most were dizziness, brain fog, utter exhaustion and just feeling generally run down. I also noticed my POTS symptoms like palpitations and feeling faint seemed to flare up – whether this was related to the vaccine I don’t know, but it did happen in the weeks after having it. I think I’m back to ‘normal’ now – it’s hard to tell when you’re chronically ill, as I’m always getting flare-ups and random symptoms, but I’d say it pretty much feels like what I’m used to my health doing now.


My thoughts a few weeks on

For me personally, I’m happy that I’ve received my first vaccine and will be going back for my second one. When news of the vaccines first came out, I’ll admit that I debated whether I wanted to have one at this point in time. I had concerns about a few things, but after doing some research and speaking to medical professionals, I decided that being vaccinated was the right thing for me. As I said at the beginning of this post, I’m not here to try and convince you to have (or not have) the vaccine. That’s a decision individuals need to make for themselves, but I would encourage you to talk to a medical professional if you have any questions or concerns about being vaccinated. With this post, I just wanted to share my experiences as someone with complex chronic health problems, in case they can help someone else who is waiting to be vaccinated. 


I had anticipated getting side effects (I do with pretty much any medication or vaccination I have!) so it wasn’t a shock when I felt unwell afterwards. And actually, in my case, I was pleasantly surprised that I didn’t feel as ill as I thought I would. Perhaps that’s partly because I’m used to having periods of being quite unwell, so I was prepared to feel worse than I did. But I know the side effects vary so much from person to person, so it can be difficult to know how to prepare when you have no idea how badly you might be affected. My personal strategy was to prepare to experience severe side effects – that way, I felt ready to manage if I got really unwell and anything better than that was a bonus. And I just kept reminding myself that however unwell I was feeling from the vaccine, it would be so much worse if I actually had Covid. I’ve seen loved ones fight Covid and know how unwell some of them have been, so for me, the side effects were worth it if it gives me some protection from being as ill as these loved ones were.

If you have an underlying condition and are still struggling to be prioritised for a vaccine, the following letter templates, which can be sent to your GP, and petition, may be of some help:


The ME Association GP Letter and CCG Letter Templates


Contact GP Letter Template for Carers


Asthma UK Petition for vaccine priority

Have you had your vaccine yet or are you still waiting? If you have any other questions that I haven’t answered, please let me know